Now that CFSAC's over, what should we do?

If Phoenix Rising creates some recommended wording for future CFSAC recommendations, I encourage you to base it on the group "letter of concern" that Mary Dimmock read a summary of. One of the goals of that joint effort was to influence what is on the CFSAC agenda. Make them talk about what we want them to talk about, the things we want.

Mary can tell you more about the process and efforts she went through to get so many individuals and organizations to sign on to it. I know there was some disagreement, but the areas of disagreement were set aside or were reworded in a way that all felt they could sign it. Since Phoenix Rising is a member of the Coalition 4 ME/CFS, whatever you produce could be presented to the Coalition 4 ME/CFS Steering Committee. We are much stronger if we all give the same message.

A good example of that is the CDC toolkit. Lori Chapo-Kroger, last year, made a big issue of the toolkit. At last week's meeting, others brought out the same issue, the toolkit. The message was echoed and built to a crescendo such that CFSAC acted. If the CDC doesn't take it down, we may need to go to the next level of advocacy on that issue. Some are discussing possibilities behind the scenes. Hopefully, we won't have to resort to that.

One CFSAC member noted that the orgs are working together instead of competing, which is unusual compared to what she has seen before. (This comment came after orgs gave their presentations.) Also, the group letter showed similar coordination. Having many patients and org. reps stand up behind the testimony, showing united support for it, is along this idea.

During lunch on June 14, some individual patients and org reps discussed the past failing of orgs and individual patients focusing on areas where they disagree and spending precious energy and resources on trying to convince others on those points. Then, they isolate themselves and won't work with others. This makes them weaker on influencing those in power because they are small. Also, if the message is conflicting to government leaders, then the government leaders have an excuse to do nothing, saying patients don't agree so anything they do will be wrong and they don't know what to do.

We discussed the need to focus on what we do agree on. There is enough that the great majority agree on that if we unite on pushing for changes in those areas, then we can actually move the government on that point. This is what happened on the toolkit. It is happening on the CDC website.

So, if you start with the "asks" that are in the group letter, with multiple orgs and individuals already signed on, then you will likely get more support for what you produce and it will have more power than just from Phoenix Rising.

You can read the Joint Request for Action online at the MassCFIDS site....Where are the opportunities to strengthen what we are saying in this letter? What's missing or could be better articulated?

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Thank you, Mary, for your hard work and for requesting input. I'll address here only the letter's first priority, “resolve the definition, name and classification confusion,” in terms of “what's missing or could be better articulated.”

I applaud first the sentence, “It is long past time to subset Fukuda-defined patients and actively consider the existing 2003 Canadian Consensus Criteria (CCC) or 2011 International Consensus Criteria (ICC) for those patients who suffer from the hallmark post-exertional malaise.” However, I couldn't help but look for some reference to postexertional neuorimmune exhaustion (or PENE).

In presenting its NCHS reclassification request, the Coalition4ME/CFS claimed support from the ME-ICC. Dr. Carruthers, in his presentation on the ICC, describes ME as a subset of CFS:

While it has always been essential, it has now also become urgent to segregate the subset that we are calling ME more clearly, using the ME International Consensus Criteria, so that researchers can confirm/disconfirm their results using patients who have chronic fatigue of this clearly bio-pathological origin. Otherwise the all-inclusive umbrella of “CFS”, in ambiguating natural and psychosocial kinds of fatigue, will continue to dilute the results of any investigations and maintain the pervasive confusion resulting when biopathological kinds are mixed indiscriminately.

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To characterize the relationship between ME and CFS as “equivalency or close similarity...based on the growth in scientific understanding” then is inaccurate, and I wonder whether this characterization itself doesn't help explain the NCHS delay.

The term ME/CFS is defined by the CCC. That definition's increased use, both clinically and in research, must surely be a reason for the widespread acceptance of the ME/CFS name. As Marj van de Sande explains, the name was used in the CCC because there wasn't yet consensus on ME:

The draft of the Canadian Consensus Criteria (CCC) used the name “myalgic encephalomyelitis” (ME). However, we changed it to ME/CFS because a member of the panel felt that some American patients were not familiar with the name ‘ME’. At the time we did the CCC, we didn’t have plans to do another definition in the future. In retrospect, it did serve as a good transition period.

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I struggle with the letter's characterization, “(CFS, known as myalgic encephalomyelitis or ME/CFS).” Such a parenthetical phrase could easily be taken to mean that one case definition can be loosely substituted for another. Though the ICC limits its scope to the criteria of ME and their application, it clearly signals its departure from the CCC, and it separates ME from CFS, stipulating that ME patients should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.

In a subsequent discussion paper, Dr. Broderick laments the fact that the name ‘CFS’ and its hybrids ‘ME/CFS’ and ‘CFS/ME’ have been used to refer to both ME and general chronic fatigue. He suggests that, to end confusion, we should “only use the name ME for those who meet the more restrictive ICC criteria for this very serious disease.” Unfortunately, we do still seem to need though the confusing hybrid name.

Comments like mine seem after-the-fact here. I wish there were a way for general input to be gathered before the delivery of requests such as the NCHS reclassification request and this 'Joint Request for Action on ME/CFS.'

The message was echoed and built to a crescendo such that CFSAC acted. If the CDC doesn't take it down, we may need to go to the next level of advocacy on that issue. Some are discussing possibilities behind the scenes. Hopefully, we won't have to resort to that.

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I wonder if the same strategy used for getting rid of the Toolkit could also be was used to get rid of Fukuda. The CDC case-definition changes come too slowly and too late, and their content remains suspect. Eileen Holderman was visibly shaken to learn that the CDC's clinicians aren't being asked to identify the case definition that they already use. Dr. Belay didn't seem to want to know that Dr. Klimas uses the CCC. The CDC should acknowledge that Fukuda is obsolete and that it doesn't exist in a vacuum. They should voluntarily remove it from their website.

First, I think Mark and BEG’s suggestions (Page 4) on how to create a durable structure that will enable the PR community to move forward as one are incredibly important. There is so much knowledge and valuable perspective on this forum. It needs to get out.

However, I think a working group might be too democratic in structure. It seems to me that (1) a working group of 5-10 members would be difficult to manage and (2) that the members of said working group would likely find it difficult to coalesce on important decisions. In my opinion, a more republican structure would be more favorable. As an alternative, I propose a small working group (or possibly multiple small working groups organized around different functions) with one elected head. That elected person would ultimately be responsible for ironing out disagreements or casting the final decision, if need be. Such an arrangement would prioritize forward motion, enable better cooperation with other advocacy groups, and facilitate communication with other stakeholders. While we may find it difficult to put enough trust in another person to make the final say, the only alternative is a structure that is slow and ungainly, transforming small decisions into hazardous mountains and making nearly impossible real cooperation with other advocacy groups.

I realize that more democratic arrangements are more emotionally satisfying, but we need to create a structure that ensures that the community does not become bogged down in small disagreements. Just as the CFSAC spent more time debating what advocacy groups should be posted on the CFSAC website than they did discussing the primer or the case definition (or so it seemed to me), so too could a PR working group become bogged down in a single issue of relatively trivial importance. We cannot afford that. The community needs to move fast and work to address a number of complex issues in parallel. A more hierarchical structure would be better suited for that challenge. I have faith in the members of PR to carry out such a system responsibly. We all should.

Second, I think it is of paramount importance that the community think through and come to a unified understanding of the naming issue that Ember raised on Page 5, regarding the relationship between CFS and ME.

I would like to propose a different understanding:

In the United Kingdom, the use of the single-factor Oxford definition has transformed “Chronic Fatigue Syndrome” into unspecified chronic fatigue. This was certainly not what was intended by the creators of the name, who were American. Consequently, to patients who are British, the idea that “CFS” and “ME” are the same illness is heretical. British patients with our illness think of two entirely different illnesses when they think of the “CFS” and “ME.” Hence, any combination of the two labels into one label is inappropriate. This makes sense, in a British context.

In the United States, however, the use of the term “CFS” is less associated with unspecified chronic fatigue (at least in the minds of patients, advocates, and doctors). When I (and I think many others) think of “CFS,” I do not think of unspecified chronic fatigue, but what many call “ME.” To me, both illness labels are flawed efforts to characterize the illness that afflicts me and other patients like me. In that context, it makes sense to use the term “ME/CFS,” because both labels refer (however imperfectly) to the same illness. The label “ME/CFS” is useful and advantageous because it unifies, as far as effectively possible, the different understandings of British and American patients.

For an American context, the use of the label “ME/CFS” is far superior, because it brings the community together. More to the point, however, by focusing on the labeling issue, we divide our efforts and energies, focusing our attention on a relatively trivial rhetorical question, rather than on figuring out how to devise an advocacy strategy that will get us out of this mess. If the medical community and all the patients, advocates, and “ME/CFS” specialists were moving en-masse to the use of ME to describe this illness, then I would jump on the boat. But given that that is not the case, focusing on the labeling issue distracts us. We cannot afford distractions. We need to begin moving as one. The “ME/CFS” label is an attempt to do that. Let us all accept it as less than ideal, but necessary.

I hope my thoughts help unify, rather than divide. I am pretty exhausted after the CFSAC and after writing this, so I will likely not respond to any other posts, though I will lurk. I mean no disrespect.

Well, CDC is working on creating new criteria. Problem is that they are going to take 2 years, Belay said. But, a new criteria must be "data driven" and not just what some people think.That means research, which takes time. However, we have succeeded in making them aware there is a problem and getting them to start a project that will lead to a new one. So, the ball is rolling on that now. Not too long ago, Dr. Beth Unger said the 6 month requirement is making it hard to find whether pathogens are part of the story. So, she sees the problem in the criteria too.

The DFO brought up the need for CFSAC to do something about criteria and asked the goal and the how. Sadly, there was much misunderstanding of what she was asking so that time was wasted that could have been spent laying out a roadmap to get to the goal.

My only hope is that now they defined the goal and hashed out some advantages and disadvantages of how to reach that goal, so they will be able to bring the issue up again and make the decision faster.

I do agree though, that we should bring the issue up again and again and again from many different places, else they get distracted with other things.

To sum, we could rehash this till kingdom come.
I don't think that gets us anywhere.

We really only have 3 basic options:

1) Fully back the ICC

2) Fully back the CCC

3) Lobby for a committee effort to come up with a third, data-driven, definition. But make no mistake: this will take years more and the outcome is uncertain. Do any of us really want this third option?

As far as I can see it, the logic points overwhelmingly towards either option 1) or 2). Given that ICC are newer, were published in a major medical journal, and have the full backing of a large number of experts we respect, ICC seems to make the most strategic sense.

It may not be perfect. There will surely be revisions in years to come. But for the sake of targeted, deployed, strategic advocacy, ICC seems to make the most sense.

From a political/advocacy point of view, I would recommend a full court push behind ICC, and to then use this as the basis for requesting increased funding.

The biggest source of money right now is from the CFI initiative.
N. Klimas is in charge of patient recruitment for those sutdies. I don't know for certain, but I can only assume she is using ICC, or CCC at the very least.

This is where we have the most momentum, leverage and consensus right now.

There is no perfect definition. Any definition in use now is temporary anyway - the number of biomarkers being investigated means that things could change a lot in a few years. So working on a new definition at this point makes no sense to me, nor do I agree with the direction some in CFSAC are proposing.

For the CDC to adopt the CCC or ICC, or indeed the Jason definition, then it would have to jump through a lot of hoops. There are restrictions on what government agencies can endorse, though I am not aware of the full details.

If we get the IACFSME Primer widely distributed then the defacto definition will be the CCC.

Name changes have similar problems. For a name change to have real impact we have to tie it to well validated biomarkers and a better understanding of pathophysiology. That is critical to widespread acceptance and to begin to counter psychogenic claims.

Getting hung up on revisions is not that important right now in my view. The good news is that researchers do not have to have a definition endorsed by the CDC or somewhere else to use it. It looks very much like the CCC will become the defacto research standard for now, which is a big step up from Fukuda. This impact on research is the big thing. The researchers themselves can drive this agenda. If 99% of research papers use CCC then the other papers will become sidelined as irrelevant, and this should drive the remaining holdouts to adopt the CCC. The exception is of course the UK proponents of the Oxford definition.

Its going to take something more than a name change and definition revision or universal adoption to change the medical landscape. The medical profession has been convinced to a large extent that ME or CFS is psychogenic three times by my count, each time without good evidence but lots of fancy rhetoric. The first was neurasthenia in the late 19th century. Later this term was confused and blended with hysteria, another unsubstantiated diagnosis. The second time was with ME in the 1970s - most doctors were convinced, as I see it, that ME is psychogenic due to a report on the Royal Free Hospital epidemic which was labelled hysteria.

The third was with CFS, though I am not sure the views held in the UK can be in any way separated by the view toward CFS elsewhere. The CDC were communicating with those promoting a psychogenic view in the late 1980s I think. I have yet to sit down and write a formal timeline, but that is what appears to be the case. Now of course we are not said to have hysteria, the underlying explanation is a cognitive rather than an emotive one, but its the same idea.

So to me there are two interim goals for advocacy. Promote good research (using modern ME definitions) and debunk psychobabble. We need to do both. We have other goals of course, but these are the two important ones to me at this point.

Getting the Primer widely distributed will help educate doctors as to why psychobabble makes no sense, and help a lot of us get better medical care, and this is the one really good thing to come out of CFSAC. It remains to be seen if their actions are going to be successful however.

From the CFSAC discussion, it seems that CFSAC recommending use of a particular criteria for government agencies will not work.

CCC is supposed to be clinical definition.

The CFSAC was discussing how to go about getting the better definition (whether it be one of the existing or a new one) that will be respected and used. The main point made by government leaders is that CFSAC or just individual research authors is fringe. To get the acceptance of a new or one of the existing ones, must have government agency as part of the creation of it or must have included other physician associations.

The CDC is creating a new one. And they are working with Klimas and others in creating it. It will take a few years though.

I like the idea of a subcommittee to inform the CFSAC and they are moving in the direction of more patient interaction. CFSAC committtee members are often not particularly well informed on advocacy issues - a group to feed them good information could be helpful.

I want to point out though that CFSAC has not had a great deal of influence on the government. The movement to get the FDA to hold a stakeholders meeting, on the other hand, has been VERY successful....(Its happening)..This was done entirely by putting pressure on the representatives by patients emailing, phoning, faxing...whatever...It was put together by a small number of advocates.....It took a plan and sustained action.....and it worked.

That's a very different kind of pressure than CFSAC's recommendations - my guess is that direct action movements wil lbe more powerful in the long run and be a good counterpoint to CFSAC'[s actions...ie the patients push them a direction and the professional reps on CFSAC validate it...

I want to point out though that CFSAC has not had a great deal of influence on the government. The movement to get the FDA to hold a stakeholders meeting, on the other hand, has been VERY successful....(Its happening)..This was done entirely by putting pressure on the representatives by patients emailing, phoning, faxing...whatever...It was put together by a small number of advocates.....It took a plan and sustained action.....and it worked.

That's a very different kind of pressure than CFSAC's recommendations - my guess is that direct action movements wil lbe more powerful in the long run and be a good counterpoint to CFSAC'[s actions...ie the patients push them a direction and the professional reps on CFSAC validate it...

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Cort - can you give us a couple examples of direct action movements? Are you suggesting that a emailing, phoning, faxing campaign to Sebelius or Koh might move this? Or are you saying that because the CFSAC is structured differently that this type of action won't work?

Because CFSAC has no teeth, I'm wondering if there are certain changes to their charter that would make them stronger, changes that we could advocate for in the next renewal (next year).

I do feel like we are taking a step forward by inclusion of patient advocacy groups on the panel. There was also some agency reps ((Susan Meier of the NIH for one) that welcomed the opportunity to meet with patient groups now. I think our patient group reps should consider meetings with as many of these agencies as possible before the next CFSAC so that we can get better versed on the obstacles before us. There is alot of educating that can be done in both directions right now.

It's going to be interesting to see how well advocates can interact with and inform the CFSAC membership. I think it would have worked better when Jason, Snell and Klimas were on the committee because they knew us (not necessarily personally, but they knew the field). Now many new members have a more tangential connection to CFS, which may turn out to be both good and bad for us. It could really backfire if advocates start inundating the membership with information, emails, etc. Part of our effectiveness will come from knowing when to use a "soft hands" approach vs. "hard hands" campaigns.

Thank you to everyone who said nice things about my testimony. I was impressed with the caliber of remarks at this meeting. I also posted my own personal takeaways from the meeting over at http://www.occupycfs.com/2012/06/18/cfsac-takeaways/ if anyone is interested.

It could really backfire if advocates start inundating the membership with information, emails, etc. Part of our effectiveness will come from knowing when to use a "soft hands" approach vs. "hard hands" campaigns.

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Totally agree. I think the five patient advocacy groups represented (plus other interested parties) should meet and come up with a unified way forward. We need to find ways to collaborate with the committee so that we can push our agenda within the system, we need to use our energy to work out problems for the committee.

Does anyone know how the agenda is set? Who is involved? At what point in time is it decided, etc.

Here's a couple of items for the list of recommendations for CFSAC meeting:

Start meetings at 8:00 AM each day, end at 5:00 PM Day 1, and 3:00 PM Day 2 to allow for member travel time. Everyone should be expected to stay until 3:00 PM.

Start the meetings on time, including after breaks and lunch. It is maddening to see our precious time dwindle away when we only have 4 days a year. After lunch Day 1, they were 1/2 hour late in starting, after lunch Day 2, I beleive they were 15 minutes late. I wasn't on right at 9:00 AM each morning so I'm not sure what happened this time but I do know they typically start a couple minutes late anyway. I don't even care if every is not back in the room - just continue the meeting as planned - people will come to understand that they need to manage their break time.

Renewal of charter - can we get more than 4 days per year/increase to the CFSAC budget which I believe is around $30,000 per year? We don't want to be "out of money" for such important things as video feed.

Totally agree. I think the five patient advocacy groups represented (plus other interested parties) should meet and come up with a unified way forward. We need to find ways to collaborate with the committee so that we can push our agenda within the system, we need to use our energy to work out problems for the committee.

Does anyone know how the agenda is set? Who is involved? At what point in time is it decided, etc.

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I agree that finding ways to collaborate and push our agenda is important, not just with the CFSAC but with Secretary Sebelius/DHHS and beyond is essential to change this situation.

To voice our shared concerns, fourteen organizations (including 4 that were at the table) plus nineteen patient advocates signed the 'Joint Request for Action' that was sent to Secretary Sebelius. That request asked for Secretary Sebelius to convene a meeting between ME/CFS patient representatives and representatives from across DHHS to understand our concerns and to work with us to formulate a strategic, coordinated and fully-funded response to the ME/CFS crisis.

I think we can and should build on that momentum and the ideas expressed here to continue to voice our shared concerns with the utter lack of progress for 25 years and the need to make a significant and sustained change across DHHS.

Well, at this time, I think the soft hand is needed on all issues, except the toolkit. I say we wait, giving the CDC time to respond to the CFSAC recommendation. If, a month before the next CFSAC, it isn't down and out of circulation, I say we go to plan B. And I can't tell you what that is in this open forum.

I'm thinking of the way Romney won the Republican nomination. He got all his resources and focused on one individual in each state vote. So, he picked off his rivals, one by one.

If we all focus a concerted effort on one issue each time, we can make change on that one issue. Then, we all move on to the next one big issue. Step by step, we make a difference.

In an organic way, this is happening. The CDC website was the big thing in May. Everyone's testimony mentioned it. Then, starting in November, it was the toolkit. And it was in almost everyone's testimony last week.

If one strong message comes from everyone, then it will be hard for them to not do it. I am thinking also, in contrast, the failure so far of the Occupy movement. They have so many things they are complaining about that it has diluted the strength of what they want. If they stuck to one big thing, got it done, then they could move to the next. If the Occupy movement said, "Pass a law limiting corporate donations to $1,000, then they all pushed for that one thing, they would force politicians to do something or explain why they aren't. Instead, the Occupy movement is against corporate interests corrupting the political process, and a whole bunch of stuff. But there is no one call to act. And thus, they are weak and not succeeding.

Setting aside the toolkit for now, as we wait to see if CDC does what CFSAC said, what is the next big item we want changed? If you were to choose one.